MPIP: Melanoma Patients Information Page

The MPIP is the oldest and largest community of people affected by melanoma hosted through the Melanoma Research Foundation. It is designed to provide support and information to caregivers, patients, family and friends. Once you have been touched by melanoma—either as a patient or as a family member or friend of a patient—you become part of a community. It is not a community anyone joins willingly. But if you must be part of this group, you will find no better place to find the tools you need in your journey with this cancer, and the friends who can make that journey more bearable.

The information on the bulletin board is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

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Kenny's picture
Replies 1
Last reply 9/2/2014 - 10:51pm
Replies by: cavsnut

We lost a great man to a yearlong battle with Melanoma on 9/2/14.  He was my father in-law.  I have loved and respected him for 38 years.  His Melanoma was found too late and was very aggressive, he fought the battle hard but it took him without notice.  He had brain tumors that were not yet detected; he was scheduled for a MRI on 8/29/14.  A blood vessel that was feeding one of the 2 tumors in his brain burst on 8/25/14 and he had a severe stroke.

I am so thankful for the time spent with him over the years and especially the past year walking through this terrible disease with him.  I found out on 3/25/14 that I have Stage 3a Melanoma, this drew us even closer as I could now personally relate to his fears and concerns.  

On 8/23/14 my mother in-law, father in-law, wife and I went out to dinner to celebrate our wedding anniversaries together; theirs was 57 years on 8/12/14 and ours was 35 years on 8/26/14.  I am so glad for the memories. 

Please pray for our family and for my wife, as she not only grieves for her daddy but also fears for me.

Thank you,

Ken     

Ken Sears

Stage 3a 

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theresar's picture
Replies 2
Last reply 9/2/2014 - 4:55pm
Replies by: RJoeyB, BrianP

I frequently read on these posts people talking about their tumor burden or tumor load. What exactly does that mean? Does it have have anything to do with the LDH factor or some other lab tests or just the number of tumors one has.

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Anonymous's picture
Anonymous
Replies 5
Last reply 9/2/2014 - 3:38pm
Replies by: Anonymous, Janner

Hi, everyone.

My husband, age 72, had a melanoma removed in May with wide excision. At the time, the plastic surgeon said that for the most part the margins were clear but one cell remained.

Recently, small, pink bumps have been coming up on his scalp. He says they hurt when he presses on them. 

He is supposed to have an appointment soon with his dermatologist. I am going to go into the appointment with him because he doesn't hear well and I have some questions.

We haven't been given a pathology report - is that typical? So I know nothing other than that my husband said the dermotologist told him this was the 'best' kind (husband's interpretation) to have. However, the plastic surgeon, whom my husband knew professionally, asked him, "You do understand that this is cancer?" and told him it was malignant melanoma.

Any thoughts are most welcome!

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mwcollins's picture
Replies 2
Last reply 9/2/2014 - 4:51pm
Replies by: BrianP, RJoeyB

Hi all! Kevin & I have been quiet for a while since his last surgery and scans. Stage 4, but NED. Lately he has been having some mild discomfort in his belly on the opposite side of where he had his small bowel resection. He thought he might have tweeked it at the gym, but it just won't go away. As I know you are all keenly aware of being hyper sensitive to anything out of the ordinary, he is at the doctors. I am so praying for it to be nothing, but can't rule anything out either. Please keep Kevin in your thoughts and prayers. Thanks!

Megan

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Anonymous's picture
Anonymous
Replies 3
Last reply 9/2/2014 - 9:19pm
Replies by: JoshF, RJoeyB, mwcollins

I'm stage 4 and since May I've had slight neck pain. Many of you a familiar with being hyper-sensitive but I think it's always better to err on the side of caution. It's nothing excruciating and some days no pain at all. I'm not sure if it pillows...I've been using newer foam pillows...my wife stopped because it hurt her neck. I also tweaked my neck good years ago in Marine Corp. I wasn't real kind to my body when I was younger. Anyway, thoughts from anyone who can tell me what a met to spine or bone feels like? I have scans Oct 3rd....yes getting nervous!!!

Josh

Let's work for better treatments....for a cure!!!!

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MattF's picture
Replies 3
Last reply 9/2/2014 - 6:53pm
Replies by: Ginger8888, BrianP, Tim--MRF

I dont know when or how but now I'm a little confused on the Ipi progression....

Isn't it that the yervoy itself works late? or the side effects come late etc?

I'm on my 2nd infusion and my visible palpable tumors in soft tissue areas are smaller.....just not looking for false hope lol.

Matt

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Happy_girl's picture
Replies 3
Last reply 9/2/2014 - 4:45pm
Replies by: BrianP, Happy_girl, Linny

Hi everyone!  I just recently ( last Thursday) had a clnd under my left arm.  The had found a few micro melanoma cells in the sentinal node- so had the clnd.  I was curious what your recovery was like... Length-time- range of motion- weight limits with holding objects.  It's been hard because I haven't really been able to pick up my 7 month old for almost a week.  Also- it's so hard not to be scared and discouraged.  I'm praying that this surgery takes care of any would be melanoma left. Thanks for your thoughts!  

Also- does it sem like there will be more options than interferon for 3a soon?  I keep hoping that some of these promising new drugs will filter to 3a soon.

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eturner's picture
Replies 4
Last reply 9/2/2014 - 10:06am
Replies by: eturner, Owl, Ed Williams

Here is an update on my husband... He has been on the braf combo for about 5 months now he stared having a slight amount of pain in July ( Oncologist said was probably nothing and CT showed stable bone mets), I knew in my gut something was wrong. Two weeks ago he finally said the pain was more than he could handle and he needed to go back for more scans..... CT showed stable bone mets, Doctor agreed to do MRI due to pain...... Friday he had his MRI, as of this moment I have yet to hear from his Oncologist.... His PCP however has callled me and said that the MRI shows his L5 Vertebra has a burst fracture due to tumor growth and a very large very deep met in is right femur, along with mets to spine, hip and pelvis from pervious scans!!! I am beside myself and scared out of my mind..... My husbands PCP said he was shocked no one had called us considering the severity of the L5 brake.

 So I know the combo has run its course and I know PD1 is the best option we have, I'm just nervous about what I've read about the time it takes for med to take affect. Advice and Support needed... THANK YOU!

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Schwan-a-cure's picture
Replies 1
Last reply 9/2/2014 - 1:17pm
Replies by: RJoeyB

Has anyone had proton therapy for brain mets?  Do you know if they can treat multipules at once or if they can treat more because of protecting uneffected tissue?

Thanks,
Allison

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Exhausted's picture
Replies 6
Last reply 9/2/2014 - 10:34am
Replies by: Exhausted, Patina, Janner, Anonymous

Hi,

I have a very dark brown mole that is literally 1mm in diameter that I've had for years that I am a bit concerned about.  My dermatologist has no concern, but I started searching the internet and found multiple stories of people talking about "pin head sized melanoma" which are getting me a bit worried.  However, I can't seem to find any pictures to compare.  Does anyone here have pictures, links to pictures, or experience with a literal pinhead sized melanoma?

Thank you!

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Anonymous's picture
Anonymous
Replies 6
Last reply 9/2/2014 - 4:38pm
Replies by: Anonymous, RJoeyB, Tim--MRF

Can anyone tell me if they have taken temozolmide and whether it has been successful

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jualonso's picture
Replies 3
Last reply 9/2/2014 - 10:03pm
Replies by: Bubbles, jualonso

Hi friends, 

i would like to ask for an advice from you, now i have to take my first important decision, Today my PET/SCAN has revealed Progression on COMBO BRAF INH. then i have to go one step forwards.

In this moment what i have available is Ipilimumab, because EAP of pembro is just after fail ipi.

Other Option could be wait a little to see clinical trials i can do it, Im in Spain and nothing interesting is available at the moment.

I have decided with my doc because just a new spot is in my lungs but other are still missing that we are going to continue with the braf inh, till i decide what to do next. I have low Tumor burden so far.

I would really apreciate your advices

Jualonso

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Johngifford's picture
Replies 5
Last reply 9/2/2014 - 5:50pm

Went to optometrist had images from two years ago when I visited him last month he said he found something that had grown significantly in the two years probably choroidal melanoma. so I went to my primary doctor Dr. Bailey's office in Ventura got referral for retina specialist Dr. Hung at Seaview medical Center nice doctor she agreed with diagnosis and wanted to send me to UCLA the closest and really only ophthalmolic oncology center in our area. so back to my primary doctor to get referral from my blue shield HMO, so their reply came back last Friday, need to be seen inside our network, and they referred me back to Seaview. Who had already told me I need to go somewhere else. And that my tumor is stable, which is not true. And I do not know where they got that from. I am frustrated, and I feel like too much time is going by. I don't know how to handle this Hmo Any response would be appreciated thank you John

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MattF's picture
Replies 5
Last reply 9/2/2014 - 10:17am

Been a while....

Stage IV since Dec 2013

BRAF Combo effectie fail after 6 months.

on 3rd infusion of Ipi next week.

 

Recent scans (July) showed 7 new spots on the brain. 

Start RadioSurgery on Tues 2 Sep 2014....

Still on Ipi and Xgeva for other tissue and bone mets.

 

So the brain mets...largest being 1.9cm x 1.5cm are the closest alligator to the canoe now and the immediate issue.

So the plan is in place.

Matt

oh as a side note anemic with low hemoglobin over the last 14 days needing 2 blood transfusions...so that also is of course on our radar.

 

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Schwan-a-cure's picture
Replies 5
Last reply 9/2/2014 - 12:54am

Hi Everyone,

My husband Joe (30) was diagnosed with melanoma at stage IIIb a little over a year and a half ago.   Had surgery to remove and lymphnodes out then was on a trial of yervoy for about 3 rounds until side effects put him in the hospital for a month.  At that point everything was coming back clear until 6 months later when we found a few brain mets and 3 spots in the chest.   We did whole head radiation and was put on zelboraf (he is BRAF positive).  Zelboraf seemed to work and cleared up the chest, but the brain mets have been annoyingly difficult.   He was put on temador and did radio surgery.   Things seemed to be doing well until the end of this July.   

We found that the temador wasn't working and that more mets had been popping up.  Radio surgery again on the biggest ones.   We have also done a PET recently and found 3 small spots back again ( 2 in liver and 1 in thigh).   His oncologist has started him on BCNU.

Then the biggest blow this week:   MRI shows more brain mets popping up and the radiologist essentially said that he didn't know where to start since there were so many (I believe about 40 small total now...)   and that another round of whole head was out and that the radio surgery wasn't really an option for fear of long term damage.   

What I was hoping to get from all of you was some advice:   Any reccomended drugs or treatments that you have had good experience with knocking out brain mets? Drug combinations? Should I look for a second oppionion from another radiologist or is this pretty common?   We are happy with our oncologist (at an amazing cancer center John Stoddard in Des Moines, IA) but I'm wondering if there might be a better melanoma specialist or center we should look into.   Any advice would be great.  I'm curious about the cancer treatment centers of america but I'm a bit skeptical since I see so many commercials on tv.   Also,   I'm interested in any complementary or homeopathic therapies you might suggest. 

 

I know things are looking rough... and that I might be grasping but I have to believe that we can still fight this.

Thanks,

Allison 

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